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Have I got CFS/ME ?

Posted , 5 users are following.

louise1971
louise1971

Hi.

I'm 43 yr old woman, normally fit & well. Started this year just having days where I felt a bit 'fluey' - chills then burning hot, aches & pains, especially in lower back, headaches, sometimes very dizzy, nauseas but never actually sick. In April I had a cold - then I spent a whole 24 hrs in bed, couldn't raise my head off the pillow , freezing cold then burning up - also had abdominal pain.  Ended up in  hospital where they discovered I had a UTI, with e-coli.  Had kidney scans, chest x-rays etc & was sent home 4 days later.

Since then, approx once every 4-6 weeks, I get days where for no reason, I just go downhill incredibly quick.  I feel as tho all my energy has drained out of me, all I want to do is sleep.  I get bad headaches & sometimes it feels like my head is on fire.  I ache everywhere from the chest downwards - I feel like I've been hit by a train.  I also get palpitations - tho not usually on these bad days.  My short term memory is also pathetic to put it mildly.

I've had 3 similar days within the past 6 weeks so they seem to be happening more often. I went to the docs on Monday,  & because the symptoms, (tiredness, aches etc) were similar to before, the doc thinks that I may have e-coli again, but this couldn't explain the coming & going of the symptoms.  I saw an advert for this website, it lead me to CFS & it sounds like its a list of my symptoms.

Some articles state that you need to have symptoms for at least 6 months & for at least half of that you should be ill - that's not what I'm reading on here.

So - in your expert opionion (if you actually have ME/CFS you know a lot more than the professionals!) - would you say I need to push this with the doctor?

Thanks.

0 likes, 9 replies

9 Replies

  • david59662
    david59662 louise1971

    Posted

    Hi Louise,

    Nearly 12 months into my illness, initially post viral fatigue, from what i have learned about CFS it sounds like you have it, it's just a label. I would suggest an adrenal stress test, i have a strong suspicion that alot of fatigue issues are related to dysfunctional adrenals, which also effects the thyroid.

    • olivia3636
      olivia3636 david59662

      Posted

      Hi David, yes there is a lot of evidence that suggests that CFS/ME is related to the adrenal. The question is are the faulty adrenals the reason or a symptom? I'm 19 and have been sick for 6 years. Undiagnosed, but definitely in the range of CFS/ME. That was one of the first things suggested to me, but my doctor and I will not settle for CFS seeing how it's just an umbrella term. I would get in depth adrenal/thyroid tests done just so you have the numbers and understanding, but I don't think the adrenals explain everything. The loss of energy is down to the cellular layer. I'm looking into gene mutations. Perhaps a virus mutated or activated these mutations. Just thought I would give my input. 

    • jackie00198
      jackie00198 olivia3636

      Posted

      I've read again and again that in ME/CFS, the hypothalmic-pituatary-adrenal axis is affected. So the adrenals are affected by this illness. That's why we react badly to, for instance, stress and caffeine.
    • olivia3636
      olivia3636 jackie00198

      Posted

      Yes, exactly. All I'm saying is the adrenal-pituitary-thyroid axis a symptom or the cause? I thought it was the cause for about a year, did a lot of research, but came to a dead end. I did find out that I have a very mild case of congenital adrenal hyperplasia due to 11beta-hydroxylase deficiency. Which has caused PCOS, poly cystic ovarian syndrome. I peraonally think the adrenal-pituatary-thyroid axis is a symptom and not the cause, but I'm not a doctor or anything, just an opinion.  
    • david59662
      david59662 olivia3636

      Posted

      Hi Olivia, yes good thinking. For me i was drawn toward traditional chinese medicines view of CFS which is a form of 'jing' of life force/essence depletion and that this is stored in the kidneys. I like the idea of using herbs to nourish organ systems, the down side is i think it takes a long time to work, but i am heading in the direction. I'm doing the herbals with natural diet with light exercise. I'm also doing adrenal rebuilder as it nourished the entire HPA axis. With CFS there is clearly different variants of it, no two people are the same. Guess that comes down to constitution/genes. I'm confident of recovery.
    • david59662
      david59662 olivia3636

      Posted

      Hi Jacquie, yes it COULD be a symptom OR it in fact could be THE ROOT cause. I think for many CFS'ers like myself HPA dysfunction is the root cause. I've read that with a viral attack the body is stressed, the adrenals have to work hard to restore homeostasis, but after this they are left fatigued. They autopsied people of the 1918 spanich flu and all of them had adrenal dysfunction, they weren't infected but the adrenals were damaged by the infection. I was initially post vieral after a few years heavy stress, it's high on my life. Also adrenals take a a long ol time to heal 1-2 years depending on damage. Good thing to know our bodies can heal.
  • jackie00198
    jackie00198 louise1971

    Posted

    Yes, absolutely. I was diagnosed after only 3 months, despite the 6-month rule. Right now, if you're having bad days only every 4 to 6 weeks, you may be having a relatively mild case of this illness. Your symptoms sound very much like ME/CFS. You need to have bloodwork done to rule out anything else. This is a diagnosis of exclusion, as there are no biomarkers for ME/CFS. I can't emphasize how important it is for you to rest and take care of yourself. Otherwise, this can escalate into a very nasty illness.
  • louise1971
    louise1971

    Posted

    Thanks for all if the replies. Got to say a lot of it's gone way over my head at this point! It seems a very complex illness. 

    I intend to put the possibility to my GP who I presume will order blood test to rule out thyroid problems etc. 

    Feel like a bit of hypochondriac grasping at straws, but I know something isn't right, and I can't start to fix it until I know what's wrong! 

    I've got 3 children, one of which is Type 1 diabetic, so resting can be difficult! 

    Thanks again....

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